A New Low

1.5:  The lowest white blood cell count yet.

My conversation with the rheumatology nurse left me with no doubt… little white pills are most certainly on the horizon.  A re-test is planned for the end of the month, so I have two weeks to increase my count enough to plead my case to remain prednisone-free.  At this moment, however, in the glare of an undeniably dangerous WBC, I can’t help but feel disheartened.  There isn’t much lower it can go.  I may not have a choice.

A Risky Convenience

Tonight, while watching an episode of “Smash,” I was surprised to see an old friend of mine on the small screen.  The friend, you ask?  Evil P!  Yes, good ol’ prednisone has made it to prime time! Suffering from inflamed vocal chords, Smash’s main character is forced to take the “miracle drug” in order to keep the lead role in a musical.  When she laments the “ape-like” hair growth and weight gain that is sure to come, her friends make light of it as though it were akin to popping a Tylenol.  She goes against her instincts and takes it, which causes a hallucination and mood swings.

I appreciated how the episode showed some of Evil P’s real side effects and how stressful and sometimes terrifying it can be for the person who is taking it.  However, there was still a sense of normalcy and acceptance to the side effects she displayed. I can’t blame the show for that, however, considering this is society’s general attitude towards taking prescription medication.  I try to take a balanced approach to this issue, especially in light of the fact that Evil P helped bring me back to the “Land of the Pain-Free.”  I know that as a patient, you must weigh the risks and benefits of every drug you take, but that kind of analysis only comes with time and requires a sound and peaceful mind, not one that has just been diagnosed with something you don’t understand.  I’ve taken many drugs with side effects like cancer, psychosis, infertility, and blood clots to name a few. In fact, taking one particular drug almost killed me. I’m not saying that these drugs don’t help people or that if in another life threatening situation I wouldn’t take it, I’m saying that more often than not, these “quick fixes” are used much longer than they should or they are taken much too casually. We’re told from a very young age that it’s normal to take medication.  My doctor says to me regularly that I should keep taking my meds for “upkeep” since it’s working so well, but never tells me what to do so my body produces what it needs on it’s own.  And when I am tapered off of it, there are no additional instructions.  We just cross our fingers and hope that symptoms don’t come back.  Prescription medicine has it’s place in our world, but it shouldn’t be touted as the only answer, or more importantly, the first answer.  Creating more disease to cure another is not normal … or at least it shouldn’t be.

In the episode, the character does receive another treatment choice; rest.  Due to busy lives and careers, that option seems like a luxurious and impossible one.  As a result, we must choose a risky convenience over health and well-being. As for me, I’m making it a serious priority to create a life where I’ll never have to choose between the life I want to live and my health. What can I say?  Like a true Gemini, I want it all.  :)

Great Responsibility

I wrote this unpublished post at 1:18 a.m., three weeks ago:

“As for me, all I know is that I know nothing.” -Socrates.

At times, I am asked for advice.  I’m honoured, but then, equally humbled by reality.  I am healthier than I’ve ever been, but the disease is ever-present.  “Wellness” will always be, at least in part, illusory.

Disease comes with great responsibility.  Not really the super-hero power I had in mind.

I am three weeks away from these thoughts, sweating slightly in my still zipped up winter coat, procrastinating the journey back down to the packages I’d forgotten in the trunk of my car.  I don’t really remember why I chose not to post this. Perhaps I thought it was too whiny, too repetitive of things I’ve said and written before.  I had been preparing for a tea date requested by a friend who was just diagnosed, not sure of how I felt, uneasy and afraid of giving bad advice.  Later, I watched myself tell my story, the easy release of things once so raw, so tight, so grating, now soft and lifted up and out like the steam off our cups.  Too melodramatic of a scene?  I suppose so.  Influenced, no doubt, by the epic novel I’ve hardly been able to put down.

It was the first time I had been in the physical presence of someone wanting to talk with me about Lupus.  All the other times, it had been online and that day, my story was much more of a “history,” more than ever before.  How much I helped, I don’t know, but it helped me to talk with her… even if I’m unable to describe how.

And now, back to the subject of superhero powers, my sometimes kryptonite, Evil P, has been out of my blood for a month and a half!  I have a new plan with my naturopath for the Winter and am looking upward and onward to some new nutrition challenges in the New Year.  I know that if I want to stay off Evil P I have to work for it.  As mentioned previously, “Face Forward’s Raw Food Challenge” is on deck as well as the start of half-marathon training for a race in June. The goal is to finish, even if the half-marathon turns into a half-walk-a-thon!  Other food experimentations have been ongoing, but the busy Fall months at work prevented me from posting about yummy successes like no-bake oat bars and peanut chicken.  More “Cooking with the Wolf” adventures to come, I promise!  And yes, it’s true, my disease means great responsibility to this previously abused and ignored body of mine.  Time to nourish it and let it shine!

On The Naturopath: Taking the Herbal Plunge

Exactly two years ago, I was pacing the emergency room in frantic circles, my mind spiralling down into psychosis.  I will never know what truly caused it.  Lupus-induced brain inflammation (Lupus Cerebritis)?  The side-effects of prednisone?  A lethal combination of both?  Since then, Evil P, despite strong evidence it caused the most difficult time of my life, has remained, not only in my body, but as an integral part of my treatment plan. Does my body really need Evil P to live a quality life with Lupus?  At the moment, due to my white blood cell fluctuations, my rheumatologist assumes I do, but I’ve experienced no change in my energy levels or  (lack of) symptoms when I was on or off Evil P.

My recent blood lab revealed that my white blood cells are up from 1.9 to 2.7, most likely caused by the reintroduction of Evil P.  However, whether the original dip in white blood cells was due to being off prednisone is still in question.  A person’s white blood cell count can fluctuate daily depending on whether the body is fighting an infection at the time.   When analyzing my previous labs, my naturopath discovered that I was showing levels of bacteria in my urine, a sign that I may have been fighting an infection at the time.  She was disappointed that my rheumatologist didn’t order another blood test to reconfirm results before putting me back on a drug that has so many mental and physical side effects.  Regardless, it’s clear that my body still needs the help of an anti-inflammatory, whether it’s natural or chemical (or both) is still in question.

Tomorrow, I start a three-month plan with my naturopathic doctor to slowly phase out prednisone with the help of herbal supports.  At exactly the three month point, I will get blood work done and re-assess according to the results.  I’m still on plaquenil everyday, twice a day, so it’s an experiment involving chemical and natural interventions in equal parts.  It’s safe, slow, and under stable conditions.  I know I’m in good hands with both my naturopath and my rheumatologist.  They both have different views, but I’ve never doubted that both of these amazing women have my very best interests at heart.

I’m not pledging allegiance to either side.  It’s important to note that my naturopath herself is taking a combination of herbal and prescription medication to treat her Lupus. I’m tired of feeling confused about my treatment plan, of being the ignorant “yes man,” of not truly engaging in a thoughtful investigation of my own health.  Shifting your confidence to your body’s own abilities and natural remedies rather than prescription medication means a higher level of dedication and commitment.  I’m nervous, but I ground myself in knowing that regardless of what happens, today, I’ve officially broken the “two year curse.”  For the last six years, I’ve experienced an almost identical sequence of events almost exactly two years apart:  Severe flare, hospitalization, sick leave, move back into parents house, short period of wellness, regain independence, return of symptoms, repeat.

Not this time, baby.